pp. 65-69 in Protection of the Human Genome and Scientific Responsibility

Editors: Michio Okamoto, M.D., Norio Fujiki, M.D. & Darryl R.J. Macer, Ph.D.

Copyright 1996, Eubios Ethics Institute All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire with Eubios Ethics Institute.

Fukui Session: Fourth International Bioethics Seminar in Fukui

Human Genome Project: Bioethical Aspects and Socio-Cultural Considerations in the Context of Indian Society

Jai Rup Singh(
Professor and Head, Centre for Genetic Disorders, Guru Nanak Dev University, Amritsar, India

The ethical laws are determined by the present needs and requirement of a society and in a particular framework of time and circumstances, and therefore can not be the same for all the countries, all the communities, and all the societies. They are there for a particular period of time and are in continuous state of flux, change and modifications. This change had been very slow in the past, due to relative isolation of the societies, but with the advent of fast communication, shrinkage of world has resulted into globalization of every aspect of life and a rapid change is occurring in the attitude, acceptability, and comprehension of the individuals of those societies where democratic systems exist and the religious fanaticism is no longer moving towards the frenzied levels with state patronage. In view of the information expected from the Human Genome Project and the consequences thereof, the need is to have some basic bioethical principles cutting across cross-cultural boundaries to safeguard our genetic heritage from exploitation.

Bioethical Norms: An Ever Changing Scenario

The ethical norms in a society are governed by complex interaction of its needs, desires, religious dictates, cultural ties, social customs, literacy levels, apprehensions and fears of exploitation, issue awareness, political stability in system, patriarchal or matriarchal family structures, economic well-being, social prejudices, health care policies, war and peace, extent of cross-cultural interactions, level of industrialization, property inheritance rights, gender equalities, etc. However, application of ethical principles becomes more complex when the issues concern the personal health or life of only a particular individual or only his family and the society tries to impose the sanctions in the form of bioethics.

Trends in the society change with time and so do the bioethical principles. This is apparent because these norms are set, keeping in view the perceptions of that period. Additionally, historical information, speculations based on current trends of development, available scientific knowledge and ensuing scientific discoveries contribute considerably to these changes. What is unethical today in a particular society may be ethical tomorrow or vice versa. What is normal and completely ethical for one society may look barbarous, repulsive, unimaginable and totally unacceptable to others. According to a recent report published by World Bank about 2 million girls are subjected to genital mutilation every year. It may appear inhumane to most, but for the North African Muslim populations, where it is a norm, surgical removal of the clitoris in the young girls is ethically accepted and defended as a necessity to safeguard the aesthetic and moral values.

Universalization of Bioethical Norms

The newer recombinant DNA technologies relating to health are percolating globally with lightening speed, and the world is getting gradually reduced to a very small unit with no barriers. Consequently, no country can escape from the fall-out of these technologies. The ethical need is to make people, especially in the developing countries, aware about the pitfalls, should these technologies be adopted blindly and practiced in an uncontrolled manner. They should also be informed about the merits of these but also need to be made aware of their misuse in the hands of the unscrupulous or unethical people. The exploiters could be the politicians, scientists, businessmen, multinational companies, administrators or policy makers and their aim primarily is exploitation for narrow personal gains. It is obvious that protection is needed, not only from rich but also from the rulers. I would like to give an example to support my statement. Recently, in the People's Republic of China a Law, effective from 1 June 1995, has been passed on Maternal and Infant Health Care wherein a premarital selection by the physicians will decide whether a couple should have a child or not. Article 10 of the relevant Law states: "Physicians shall, after performing the pre-marital physical check-up, explain and give medical advice to both the male and female who have been diagnosed with certain genetic disease of a serious nature which is considered to be inappropriate for child bearing from a medical point of view; the two may be married only if both sides agree to take long-term contraceptive measures or to take a ligation operation for sterility... "

As norm-determining-parameters vary, it is impossible to have the same set of bioethical principles implemented or enacted in all the countries. However, the need is to establish certain basic bioethical norms which cut across cultural and social barriers and be respected in accordance with the "Universal Declaration of Human Rights" (UN 1948). These include dignity of the person, right to live, security, freedom, equality, and privacy. The CEC-WG-ESLA (1991) has rightly pointed out that it is necessary to maintain adequate harmony between the individual and the social rights vis a vis technical progress.

The Real Bioethical Needs of Developing Countries

Who needs bioethics more: the developed world or the under-developed nations? I recall an article by Olweny (1994), which appeared recently in the Journal of Medical Ethics. In this paper, the author emphasizes that the contemporary issues of bioethics, for example, euthanasia, surrogate motherhood, organ transplantation, and gene therapy are primarily applicable to the industrialized and developed nations and have no relevance to most of the developing countries. Does this argument take into account the social realities? In my opinion it does not. It is true that there is prevalence of hunger, poverty, war, resources crunches, etc. in the developing world but that does not mean that we should not think over bioethics. It will be highly inappropriate not to practice bioethics particularly in the light of exploding technological developments in biomedical sciences and not feel concerned over the imminent fall-out of discoveries from the Human Genome Project. Bioethics in developing countries may probably not be needed urgently to protect the rights of genetically affected individuals, but it has an important role in protecting the poor, uneducated and unaffected persons from exploitation by rich and influential genetically afflicted individuals. The sense of bioethics (WHO 1995) must also prevail whenever there is undue exploitation of the human gene resources of the developing countries by the developed countries.

In fact, it is the large uneducated and poor population of the developing world which needs to be protected through stringent bioethical laws not only from their own privileged and greedy fellow countrymen but also from the unethical designs of some from developed countries. This can be achieved only through global efforts, as is clear from the following example.

Trading in Human Organs - the Bioethics of Organ Transplantation

Although it is wile, deplorable, morally reprehensible and unethical, but one can buy a live donor kidney for $1000, live cornea for $3000, skin for $30 per patch, a cadaver for $200 and a full skeleton for $300 from the "human spare parts market" of the developing countries. Just a few years ago children from Honduras and Brazil were sold to other countries where traders converted their bodies into "organ farms". There were many reports of donors being flown to Europe to sell their kidneys to foreign buyers. After these countries banned such operations, the foreigners seeking such operations flocked to India. The question is, who is at fault? The poor person - who being unable to meet his two ends prefers to trade a kidney rather than face starvation and death; or the unsuspecting patient who goes to a hospital for some other operation but later on finds that one of his kidneys has also been removed for transplantation. In my opinion, in most of the cases, the well educated, and well-informed person who, usually is the physician or surgeon, is to be blamed. After enactment of a law that banned organ "donations", the rampant business in human organs trafficking has been checked to a great extent in India. This law on the lines of bioethics was needed essentially to stop the commercial prostitution of the human organs (Brody 1993) in the developing countries. Similarly, we do need laws that are based on bioethical principles to prevent exploitation of the people of the Third World through the recent advances in medicine, genetic engineering, and the potential information which the Human Genome Project is to unravel.

The Fears of Human Geneticist

The role of human geneticists in past has been controversial. In the perspective of our knowledge from history there are instances when human geneticists played to the tune of politicians. The most ugly face of this co-operation was the massacre of millions under the Nazi eugenics movement. In light of the attempts made by some human geneticists to underplay the role of environmental factors in gene expression, exaggeration of the ultimate potentialities of the Human Genome Project upon decoding 100,000 odd genes and the projected power of the genetic engineering in breaking the species barriers, the human molecular geneticist, in the eyes of a common man is trying to emulate not only God but has also the potential to act as the Devil. The main disturbing aspect of recombinant DNA technologies is the positive eugenics as we, the human beings, do appear to have an urge to improve our own race, either by assortative mating or by genetic manipulations (Annas and Elias 1993). As we know from our experiences with the prenatal diagnostic techniques (Shushan and Schenker 1993), once germ line gene therapy techniques (Wivel and Walters 1993) are well established, it may not be possible, to prevent the application of these technologies for the enhancement of other non-disease characteristics (Murray 1994, Strong 1993) in humans.

Bioethics- Whose Responsibility ?

In developing countries, majority of the population is neither aware of the intricacies of genetics nor its bioethics. The molecular geneticist is usually confined to the laboratory environment and the biological material. Mostly he does not come in direct contact with genetically ill persons and thus is devoid of the humane aspects of the disease on which he is working. The medical geneticist, is the one who actually remains in constant touch with the genetically afflicted person; and is aware of the laboratory potentialities, prognostic aspects of the disease and also the humane angle. Thus, it is his responsibility to inform the public and the patients correctly about the real possibilities and the inherent dangers. This is the ideal stage where the bioethical principles must be properly implemented. He can visualize possible consequences of the absence of any bioethical norms and should be instrumental in their formulation and implementation, not only to safeguard the lives of the relatively under-privileged people, but also to safeguard the future of human race.

Social Acceptability

Unless the promulgated bioethical principles are accepted by the society itself, the very purpose of their enactment becomes futile. It requires continuous education of the public to bring in the acceptability. All immunization programs for infectious diseases are now accepted by the public in the developing countries. In spite of the opposition by most of the religions, the family planning methods, including termination of the pregnancy, in majority of the nations are being gradually accepted. The WHO program on the carrier screening for thalassaemia among young adults from developed countries has proved quite successful (Wilson and Jungner 1968). Similar acceptability has also emerged for screening programs on several other diseases in the new born, both in the developed and the developing countries. Same type of social acceptability is likely to be achieved for the preimplantation or prenatal diagnosis, IVF, surrogate motherhood, somatic or germ line gene therapies for serious genetic defects, once the rightful fears of the public are removed and the people are educated about benefits of the newer technologies. The well educated, responsive, and aware public in itself is the best deterrent for the misuse of genetic technologies. Galjaard (1993) has also expressed the views that the ultimate success is determined by the extent of social acceptance of new technologies. Unless simultaneous progress occurs in the social, economic and educational fronts, some misuse of the genetic technologies (Shushan and Schenker 1993) would always be there. The need is to minimize it and this is best reflected in the often discussed female foeticide.

The Bioethics of Prenatal Sex Determination and Female Foeticide

The unethical exploitation of prenatal sex determination techniques and subsequent abortion of female fetus has generated a good deal of discussion on account of its, more or less, social acceptability not only in India but also in many other countries - especially the developing ones (Coale and Banister 1994, Kumm et al. 1994, Nath and Land 1994, Okojie 1994, Verma and Singh 1989, Wertz and Fletcher 1993).

India officially banned prenatal sex-determination last year, when the Parliament passed on 26 July 1994, the Prenatal Diagnostic Bill. This bill is explicit in regulating the establishment and functioning of Genetic Counseling Centres, Genetic Laboratories, and Genetic Clinics. The law specifies that prenatal diagnostic techniques can be conducted only in case of i) chromosomal abnormalities; ii) genetic metabolic diseases; iii) haemoglobinopathies; iv) any other abnormalities or diseases as may be specified by the Central Supervisory Board of the Government. The defaulters are liable to prosecution and punishment with imprisonment up to 3 years and a fine up to Rs. 10,000 (approx. $ 300). Has enactment of this law achieved its aim? Only the blatant advertisements have been replaced by highly suggestive ones. No one has been prosecuted. The tests continue as before, except that there has been an upward revision of the fees! The reason is very obvious. The society's acceptability to this bioethical law is still not there, because complex interaction of social, cultural, economic and religious factors favours males. Moreover, this bioethical law has been enacted too late.

A survey on human geneticists from 19 nations showed that 52% in India, 30% in Brazil, 29% in Greece and 20% in Turkey would perform prenatal diagnosis to select a male fetus for a couple with 4 daughters and no sons. The majority in the USA (62%) and Hungary (60%) would also refer for or perform sex-selection (Wertz and Fletcher 1993). The bioethics with respect to sex-selection perhaps need to be reviewed, to make it more acceptable as the present norms can not be universally implemented .

Bioethics - the Achievement of the Ultimate Goal

In the absence of change in the attitude of the people, it is impossible to thrust upon the people any bioethical concept. Mere enactment of the laws does not change deep rooted customs or social norms prevalent in the society - especially the one having a large number of illiterate and poor people. The enactment of these laws merely leads to more corruption and more malpractice. The need remains in educating people with respect to the ills of a particular custom. The approach has to be a committed one, multi-directional and consistent for a period of time to bring in any appreciable changes in the cultural concepts of a population and this is not something which is impossible to achieve. Till such an awareness percolates into the minds of the concerned people, it is our duty as the privileged ones, to safeguard the interests of the unsuspecting humanity from exploitation by their educated and informed brethren whether they be doctors, human geneticists or the politicians. The first step in this direction is the enactment of laws with stringent deterrents based on the currently acceptable international bioethical principles across the cross-cultural boundaries. The holding of this Bioethics Symposium by Prof. Fujiki would go a long way to evolve the norms for protecting the human genome as such, free from the prejudices whether the informative DNA has come from a privileged person of developed country or from an illiterate, starving person of the Third World ready to sell his or his child's organs for a few dollars.


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